Hot Wired – Part I

This is a multi-part post. You can read the second part here.

Just before Christmas last year, I was scheduled to take a trip for work to visit our main office in the D.C. area. I would be traveling with a colleague/friend and his partner, and we would meet another colleague/friend at the airport, where he would be flying in from California. My partner and son would join a few days later. We would attend the company’s holiday party while we were there, which was always overflowing with good wine and great food. It had the makings of a spectacular work week, an opportunity to see and connect with colleagues whom I only see once or twice a year, a chance to let loose a little, to see some extended in-laws, to visit and see some sites and take in the nation’s capital at Christmastime.

Except, by the time that trip rolled around, I had been silently battling incapacitating, untreated postpartum anxiety and depression for over a year. I was barely sleeping. Many nights, I would go to bed with my son at 7:00, where I would lie there, staring into my phone or into the darkness until 10:00 or 11:00, and I would shoot awake in the middle of the night, sometimes as early as 2:00 AM. And, despite the cozy darkness and the steady breathing of my family and my home, I would be up, unable to return to sleep. Sometimes, I’d toss and turn until dawn, when I would give in and go downstairs to start my day. But most nights, I would accept the reality that I wasn’t going back to sleep, and I’d head downstairs in the middle of the night to nuke a bowl of oatmeal and fill the kettle with water for coffee. Some nights, I would try sleeping pills. And on those nights, I still awoke anxiously and couldn’t go back to sleep, but I was sluggish and disoriented, and I could feel my heavy blood pulsating in all my limbs, at the base of my neck, in my temples.

Probably due to a combination of lack of sleep, hormonal imbalance, and a predisposition for chemical imbalance, my fuse was exceedingly short with each month that followed the birth of my son. I had battled some depression and anxiety during pregnancy, largely because I feared that the physical symptoms I was experiencing might be more than average pregnancy issues, and I worried that I would be an unfit mother and maybe I had no business procreating in the first place. What if my child struggled with the same mental health issues I did? What if he had the same mysterious autoimmune problems? What if the medications I took during pregnancy damaged his brain and he was born with deficits? What if my partner and I never managed to traverse the wide open space that had formed between us since finding out I was unexpectedly pregnant, a byproduct of both of us processing in our own introverted, closed-off way?

By the time I climbed into a car to drive with my friends to Indianapolis to catch a flight to Baltimore for what should have been a pleasant week away, I was electric with anxiety. Every conversation felt like running a marathon. Every interaction felt like an affront. Each moment of our travel was fraught with me spending every ounce of energy I had pretending that I was not scared out of my wits that, at any moment, I was going to unravel. I missed my baby. I missed my partner. I wanted to be at home. I needed a break from life. I wanted to be alone. And every simple task was almost my undoing.

I barely survived that week. I picked fights with my partner, and became annoyed too easily with my son. I couldn’t focus on my work. I left the holiday party early, fleeing like a wild animal after only 45 minutes in a room filled with jovial colleagues where I had already mostly avoided conversation. Back in the quiet of my hotel room with my sleeping baby, I drifted off for the few hours of peace I could count on. While my sleep sessions were short, they were a reprieve.

When we arrived back home to Illinois, a friend of ours whom we hadn’t seen in over a year was at our house, where he had stayed with the dog while we were away. More interaction and continued disruption to my routine meant continually escalating anxiety in a brain that was already saturated with panic-inducing neurotransmitters and hormones. I fought more with my partner. I woke up even earlier in the middle of the night. I spent days wracked with gut-wrenching, sleep-interrupting dread at the thought of traveling to my in-laws’ shortly after Christmas to sta for a couple of days. If I hadn’t mostly given up drinking when I got pregnant, and if my in-laws weren’t mostly teetotalers, I would have probably packed a dozen bottles of heavy red wine to get me through that trip. But I gave up alcohol because I no longer liked the way it affected me, and I had been drinking way too much wine in the few years prior to becoming pregnant, and I was afraid of carrying on the tradition of alcoholism that dated back generations in my family.

I had been seeing a therapist semi-regularly since well before my son was born. I saw two different therapists to get multiple perspectives. By February, one of my therapists asked nonchalantly if I thought maybe it was time to consider trying psychotropic medication again soon. She recommended I schedule an appointment with a psychiatrist right away, since it would likely take several weeks or even months to be seen. I sat in my driveway after I arrived home from that therapy session and Googled psychiatrists on my phone. It would be nearly two months before the psychiatric unit at the local physician group could get me in. There was one private psychiatrist in town, and although I would have to pay him out of pocket, I called his office. They could get me in that week. I scheduled an appointment.

In the weeks that followed, I would try three separate medications. The first was an antipsychotic called Zyyprexa that had been around for decades, and that we knew may have side effects, but that seemed like a safe choice. When I had gone blind in 2007, I was on a selective serotonin reuptake inhibitor, or SSRI, called Lexapro. That drug had completely changed my life in the short time I was on it, but the general practitioner who had prescribed it quickly took me off of it, in case it had contributed to the optic neuritis. I had never tried an antipsychotic, but was open to whatever the psychiatrist suggested. If I wasn’t in crisis, I was headed that way on a burning runaway train. No natural remedies had touched this, and I needed help.

Within five weeks of starting Zyprexa, I had gained nearly 20 pounds. It just so happened that my wedding fell in that time frame, and I sobbed bitterly the night before the ceremony, knowing that I would probably barely fit into my dress. I was right. I was uncomfortably zipped into my dress, felt self conscious the entire day, and have only ever looked at my wedding photos once because I can’t stand to see my bloated face and body, my boobs spilling out the top and sides of my strapless dress, my too-dark makeup accentuating my double chin.

I saw the psychiatrist again the week after my wedding, and we switched from Zyprexa to a relatively new drug called Latuda. The psychiatrist had pushed this drug since our first session because it is new, there is no generic version of it, he is tight with his drug reps like many physicians (I would come to learn this fact only later, after I had already begun the drug), and our healthcare system is fucking broken. I dropped the prescription off at the pharmacy, and went to pick it up later that day, knowing that I had to leave for a work trip the following day and wanting to start taking it right away. I didn’t think I could handle gaining another pound, and the odds were that if I continued on Zyprexa, the weight gain could continue at a rapid pace indefinitely.

The pharmacy tech who scanned the prescription got a strange look on her face as she looked at the register. There was a barcode sticker on the back of her hand that she used to access the online system. All the employees wore them somewhere on their person during a shift because it was easier than typing in your identification number every time you had to access the system. It made me think of how barcodes might be used on people during The End Times to denote the mark of the beast. They wouldn’t even know it, they’d be complicit, their consumerism convincing them to just hand over their souls without a second thought.

The first time I can recall hearing a story like that one—a hand-wringing anecdote about what may happen to humans in those dark times after The Lord had come to claim his own—I was about four years old. I didn’t know what a beast was, and had not yet been introduced to the concept of the beast. The devil. That elusive, evil creature that was always working with his demons, gunning for your soul. I imagined people with numbers carved into their foreheads, their hands, and it scared me—the thought of “666” pulsating, glowing above eyebrows and wrists. Although I was to believe that my love of Jesus would save me from that fate, the ominous discussion around The End Times was always heavy and frightening in my childhood.

“Honey, I don’t know if you know, but this one has a significant copay,” she brought me back to the present.

“Yeah, I guess I kind of knew, but I wasn’t sure what it would be.”

She lowered her voice and raised her eyebrows. I imagined her glowing beast mark raising, too, and radiating a brighter white-red light to match her animation. “Well, it says that after insurance it’ll be $659.11.”

My breath caught. “For a thirty-day supply?” I asked, raising my own eyebrows.

“That’s what it says, yep,” she was not making eye contact, probably afraid I would cause a scene and blame her for outrageous prescription prices.

“Um, okay,” I thought for a moment, “Well, the doctor said he had some kind of coupons but he was out of them. Do you know what it’ll be with that?”

“You know, I’ve seen those coupons, but I don’t honestly know,” she warmed a little when she heard my voice remain even.

“What would it be without insurance? You’re sure it’s already run through insurance?” I didn’t feel even. Or calm. The afternoon was turning into evening and I still needed to finish a couple of things for work, pick up my son from daycare, and pack for my trip—which meant finding professional clothes somewhere in my closet that would stretch over my frame. Nearly $700 for a one-month supply of a prescription that I was to take every day seemed laughable.

“Here, lemme look here,” she tapped a few keys at the computer. “It looks like, without insurance, it would be $1,100 or so.”

I sucked in my breath. “Wow,” I almost whispered. “Okay, uh, I… I guess I need to call the insurance company and figure this out. I’ll have to leave it for now. I can’t pay for it.”

“Oh, honey, I don’t blame you. I couldn’t either. I understand. Most people couldn’t.”

“Yeah, I’d imagine not,” I said, fumbling in my purse for my wallet. “Can you still ring up this stuff?” I pushed my gum and tin foil toward her.

“Sure thing, no problem.” She finished checking me out and we said pleasant goodbyes, me promising to be back or call them soon.

$659.11 for a prescription that I needed. For a prescription that, in a big way, may have been life or death.

I sat in my car and dialed the insurance company.

After calling the wrong number three times and trying to navigate a confusing a web of automated prompts, I was happy to hear the automated voice reassure me that someone would be with me soon. I was waiting, but at least I was moving in the general right direction.

We appreciate your call. All of our representatives are currently assisting other customers. A representative will be with you as soon as possible. You can also find answers to most of your questions on our website. Thank you for your patience.

When the representative finally answered, we discovered that my medical and prescription deductible are all part of the same pool. And, until I have met my deductible, I have to pay 100 percent of the cost of my prescriptions out of pocket. This had never come up before because other prescriptions have not cost a fraction of the Latuda. I could pay for this now, and the Latuda would be $45 per month going forward, until six months from now when my deductible reset and I would have to pay the full cost again.

I had my health savings account (HSA) that I could rely on, which was a new concept to me. I have only been in the pool of people who has health benefits for a little over three years. Before that, I had been uninsured or under-insured. The medical debt from the MRI I had following the loss of my vision nearly caused me to have to drop out of college so I could afford to pay it off. It turns out that, even though I qualified for the hospital’s “community care” program (despite working full time and being a full-time student, I was still poor enough), most of the charges had been submitted through the hospital’s adjoining clinic.

That was the sleight of hand: the clinic could charge whatever it wanted, and it wasn’t subject to the same rules as hospitals. It didn’t have to work with you as a poor patient. There was no “community care” program. The charges were what they were, and you had better pay them, or end up in collections. End up with your credit ruined over a medical bill due to something you cannot control.

The only way I got out from under those charges was to put half of them on a credit card. For the other half, friends of mine held a benefit night at the bar I managed, bringing together musicians, friends, and local community members to raise money from their lean bank accounts to help me pay off this looming debt and stay in school. We had a potluck and a raffle and the bands played for free. I was able to pay that particular round of medical debt. In the coming years, I would continue to rack up credit card debt to pay for the care I needed—because I was fortunate enough to be able to take out credit cards to allow for that. Many people who worked just as hard as I did were not able to do the same, and ended up in dire straits over medical bills. Most of them, most of us, only went to the doctor when it was absolutely necessary. Most of us avoided the doctor unless something dangerous was going on. Because it just wasn’t worth it to rack up hundreds or even thousands of dollars in medical bills unless it was life or death. And, most often, we waited until the situation was untenable, and then went to the emergency room. I grew up that way, and lived that way well into my adult life.

Before I was a student at the university, I used a local clinic for low-income patients. It took ages to get an appointment, and the waiting room was always stuffed with people, mostly families. When I was a student, I could use the student healthcare system, and I took advantage of it. My insurance for anything outside that system was next to nothing, but I could at least access basic services. Sure, I was paying a premium for it through the high cost to attend the university, but I had grants and loans, and I would have my whole life to pay back my student debt.

Now, staring at what would have once been a totally impossible prescription cost, I was a working woman with real health insurance and an HSA, and I had options that had been unimaginable to me only a few years prior. I could potentially choose to pay for that medication with my HSA. Yes, it would wipe out my HSA and I would have to figure it out all over again once my deductible reset at the start of the new plan year. But I had access to resources, which gave me options.

Despite my now-fortunate station in life, it was not long ago I was one of the millions of Americans the pundits like to talk about. Despite working my ass off, I had no vacation time, no sick leave, no access to good health insurance, and consistently fell just short of being able to pay all of my bills. I strung together whatever I could to manage my physical and mental health. I went without medications, I skipped wellness visits, I toughed it out with home remedies and internet advice instead of visiting a doctor. I once slept with garlic shoved up my vagina because I’d read that it could cure a yeast infection without the need for a costly doctor’s visit and prescriptions (don’t ever do this; it’s inadvisable, there is no proof that it even works, and I still ended up going to the doctor that time, and just politely sidestepped any discussion of the stench of garlic emanating from my crotch). I may have exacerbated my own health issues because that was the only viable option I had.

I no longer believe that Jesus is going to descend from the sky or ascend from the grave or come from any direction to bring home the faithful. These days, I am only minimally fearful of all the prophesies from the book of Revelation. But even though I am no longer waiting for the rapture, today feels in some ways like The End Times. As the sick and the poor struggle to survive, the greedy (mostly men, let’s be honest) collude to line their own pockets. Despite the baffling number of evangelicals who still support the current administration, these are not men of God. The God I know assures us that whatever we do to the least of those among us, we also do to Him. He blesses the merciful and meek, the pure of heart. Even the God of my childhood, while he was often vengeful and violent, did not condemn his people for being unable to make ends meet, for falling ill.

To some people, this new climate we live in is about politics. And, to them, we should go back to our regularly scheduled programming and stop bickering about something that seems far removed from our lives. Except it’s not far removed from the lives of so many of us. I used my HSA to pay for that prescription, which I would later come to regret for reasons I’ll get into another time. But that option doesn’t exist for millions and millions of Americans. And mental health is not treated with the same level of seriousness as physical health issues, which means that scores of Americans are forced to go without care, which can be just as life threatening as fluctuating glucose levels, blood clots, or arrhythmia.

The day after my very expensive trip to the pharmacy, my gold-plated drugs and I headed east for a brief work trip. I picked up a colleague/friend along the way, and the trip was smooth. My first few days on the drug were uneventful, and my mood was still stable, and I had heard and read great things about this drug. I was excited and hopeful. And then, gradually at first, but then with increasing speed, things started to change. By the middle of my second week on the drug, I was beside myself with anxiety, depression, and suicidality. I barely slept. I cried hysterically off and on all day. My husband frequently raced home from work to make sure I had not hurt myself. I didn’t trust myself to be alone with my son. My psychiatrist called in a prescription for benzodiazepines, which I was having to take multiple times a day just to get through.

By the third week, I could no longer manage my high-stress job, and had to take a leave of absence. My husband and I deliberated over whether I should seek inpatient psychiatric care. I took the liberty of stopping the drug altogether; I assumed that any withdrawal I might experience would pale in comparison to the side effects that had taken over my life. By the end of that week, we determined I would start a partial inpatient program at a local psychiatric and addiction treatment facility. The following Monday, we spent two hours there together going through all the formalities of admitting me to that program. The next morning, before my son was awake for the day, I walked the few blocks from my house to the facility for my first day.

My first and only day in a psychiatric facility was terrifying, but gave me perspective. It had been a few days since I stopped taking the Latuda, and the fog was starting to lift. I was no longer crying every few minutes. I could sleep slightly longer stretches. And if I took my Xanax, I almost felt like a real, live, regular human, even if I was too groggy to do anything that required much cognition. I decided rigorous outpatient therapy was a better path for me, and I would make good use of my leave from work by engaging in activities that would support positive mental health. I would start over with a new therapist and would regularly check in with my psychiatrist, I would read some good self-help books, I would reconnect with my son. I had been working nearly 60 hours per week for about a year, which likely contributed to my anxiety becoming so out of control.

The week after my day at the psychiatric facility, I started on a very low dose of Zoloft. I would only take that drug for a few short weeks, for a number of reasons. As of this writing, it has been almost three months since I last saw my psychiatrist and stopped taking the Zoloft. I believe very strongly in the power of medication, and I do not believe this is the last time I will ever take something to stabilize my mood and manage my mental health symptoms. But, for now, I am gun shy and in no hurry to spend any more of my time or money on psychotropic medications.

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